The PFA have offered to assist Caroline and Ian Duerden (a former player at Burnley, Halifax Town and Doncaster Rovers) to set up a foundation for their son Oliver who has an extremely rare genetic disorder.
Oliver was born at 34 weeks in Doncaster (where we lived at the time) and taken straight away to the neo-natal ward for oxygen as he struggled to come to terms with life. After 48 hours, the neo-natal consultants decided to run genetic tests on Oliver as he had what they described as ‘dismorphic features’. The results were that he had a marker chromosome 1 duplication. This karyotype has never been seen before, anywhere in the world, so Oliver is quite unique.
Our son was placed on a website called DECIPHER, which records all unique children and their genetic layouts. It was on this site that we found a boy in France who was 16 years old and had a very similar collection of issues to “Olly”.
In his first few months of life, his scoliosis (a severe curvature of the spine) was very apparent but due to a hernia, we also discovered a heart murmur during his pre-operation examination. We were then transferred to Leeds Infirmary, for an eco of his heart by Dr. John Thompson. After an in-depth examination, we were taken into a room and told that Olly had Hypertrophic Obstructive Cardiomyopathy and that he was in the latter stages of heart failure. (This condition has caused some footballers to drop dead during a match and was linked to the Fabrice Muamba incident.)
Dr. Thompson prescribed beta-blockers in an attempt to slow down Olly’s heart. He said “take him home and love him” as that was obviously the thing that was keeping him alive. A tough four weeks followed in which Olly had a few funny spells where we thought we were losing him. We returned to the hospital to see Dr. Thompson who was surprised to find that Olly’s heart had calmed down slightly and the medicine might be working.
After a few ups and downs, he was classed well enough to have his hernia operation. The risks were high under anaesthetic but the surgery was necessary. At this stage (eight months) we felt a million miles away from any scoliosis intervention. After more ups and downs with eco’s, Dr. Thompson decided to prescribe Nifidapine – something angina patients take in old age along with beta-blockers. Since that day – aged one-and-a-half-years old – Olly has not looked back. He still has cardiomyopathy but his heart is relaxed and functioning very well with no signs of heart failure. In 2009, we moved to Norwich to be nearer family and Olly is being seen by Dr. Derrick, a heart consultant at Great Ormond Street.
Throughout all of the above, Olly had scoliosis - a significant 100 degree curvature of his spine, very rarely seen to such an extent in a small child. He had to have several plaster casts fixed on to his body to prevent the curvature getting any worse. These castings were changed every six months and they encased him from his waist to his shoulders. Understandably, he didn’t like them! When he was three years old, it was decided that the castings were not working. His curvature was too strong and he needed surgery, sooner rather than later – especially now his heart was functioning well. The window of opportunity arrived in September 2011.
Olly had his 12-hour operation with a huge team around him controlling everything from his heart through to his nervous system, as his surgeons fixed two titanium rods to his spine for future growth extensions. The risks for Olly throughout such a huge operation, bearing in mind that he had not had a smooth ride in the previous three years of his life, were very high. Yet would you believe it, he came through with flying colours, the anaesthetists saying that his heart behaved completely normally for the whole 12 hours of surgery.
Olly now has a heart eco every six months at Great Ormond Street and has his rods extended at Addenbrookes, every six to eight months to control his growth. He continues to surprise all the specialists and defeat the odds and currently is in the very fortunate position of not only being a happy little boy but also has no known imminent risks to his life. He continues to develop at his own pace but he’s not yet talking or walking and has plenty to catch up on.
At this stage, as parents, we are now in a place that we never expected to be with our little boy and although we are scarred quite a lot, we try, as best we can, to celebrate just what a brave young boy he is. Oliver was an IVF baby, however, since things have settled, we found ourselves pregnant again last year and he now has a beautiful little sister called Nancy.
We are hoping that telling Oliver’s story will help to celebrate what an inspiration he is - that a summer ball and golf day in 2013 will allow all of us to raise a glass to someone who really is a miracle whilst also ensuring we can raise the funds to afford everything that Olly needs and wants over the coming years.
